Nobody’s ever done that for me because I just have something that makes my head move, and occasionally I look like I’m in some pain.
When you have cancer there are so many people rallying to your side, telling you how strong you are. They pray for you and remind you that you’re not alone. I’ve seen it. They come to your desk and to your house, wear pink ribbons, hold your hand and give you hugs. They touch your shoulder and say, “Whatever I can do, just let me know.”
There are cancer hospitals, cancer centers, and cancer support groups. There are cancer blogs, cancer message boards, and countless cancer fund-raising runs. There are even commercials for cancer hospitals that remind you that there is hope for you, that you can beat this, because there are entire teams of talented and compassionate cancer specialists fighting just for you.
Nobody’s fighting for me. Not really.
The American Cancer Society has been around for one hundred years and has raised billions of dollars. By comparison, the far smaller Tourette Syndrome Association may as well be invisible. But if I had cancer? I just might have a fighting chance for the disease to go into remission, or to whip it entirely. Then look at me. I beat cancer!
“I can’t believe how brave you are,” people would tell me. “You’re a cancer survivor!”
I hate to be petty, but I’m a survivor as well. I’ve survived fifty years of Tourette Syndrome. No one realizes how hard it has been. There’s no medicine to stop my pain because I’m causing it myself. And since I’ve damaged the vertebrae in my neck, many days are pure torture. They shoot horses that have less pain.
And almost nobody says anything to me.
Am I whining? Sure I am. But after fifty years, I’ve earned the right.
Some tell me I’m nuts for preferring cancer to Tourette’s. They tell me I must be kidding. I’m not. After suffering with painful and embarrassing tics through the better part of six decades, I am serious when I say there is something attractive about even a terminal cancer diagnosis. Sure, it would be scary. But at least in many cases it would be all or nothing. Either you beat it and it’s over, or it kills you and it’s over.
Even if it goes away and comes back, at least the suffering would have stopped for a little while. My suffering never stops. Too many days I feel utterly alone and helpless. I feel adrift, abandoned, a sick nobody, a forgotten orphan of pain.
With serious Tourette’s there’s no rest. There’s no cure. There’s just you and your willpower. How much can you take? Tourette’s isn’t a tumor you can cut out or something that bends easily to the will of pharmaceuticals. The evil is not only inside of you, it is you. It’s part of you like your thoughts are part of you. It hurts you, controls you, embarrasses you. But the absolute worst thing Tourette’s does is destroy your sense of hope.
No—I don’t really want cancer. I just want the support it brings. Maybe if I had cancer people would squeeze my hand and tell me how strong I am. Maybe I wouldn’t feel like I had to chop off my arm so they could see my pain. That’s why if I could swap my Tourette’s for cancer, I’d do it before the end of this sentence.
If you have cancer, please know I am not trying to marginalize your experience. I will never know the fear or the pain that you have faced. But then, you will never know the fear or the pain that I’ve faced either. Despite the fact that some people do understand my condition, every year there has been at least one person who has reminded me to keep it in perspective. It could be worse, they tell me. I could have—terminal cancer.
Ah, the trump card. No, Tourette’s isn’t going to kill me. I can live with it, work with it, and play with it. Hell, I’m lucky!
Then tell me this: why don’t I feel lucky?
10
I Know How to Kill My Tourette’s
ONE STEP. ONE step off the roof and it would all be over.
In the summer of 2003, as a warm breeze buffeted my short-sleeved black shirt like a flag, I stood at the edge of the rock-covered roof of my mother’s retirement complex in Lincoln, Nebraska, and pondered the fragility of life. I kicked a pebble and watched it tumble off the front of the off-white building and drop to the ground, six stories straight down. I watched as it bounced off a concrete walkway, then nestled in the grass.
Ow! I clamped both hands around the back of my head, and closed my eyes as electric pain flashed through the back of my neck and settled in the base of my brain. And for a moment—one awful, wonderful moment—I imagined falling from that building, sailing headfirst through the wind toward that very walkway, eyes closed, finally free!
I managed a crooked smile. If my head hit the concrete from that distance it would explode like an overripe cantaloupe.
What would you do then, Satan? I asked, talking to my Tourette’s. Cause that would be it for you!
No more pain. No more torture. No more smiling through the agony or pretending to be all right. No more stupid comments or funny looks. No more enduring the unendurable, or explaining the unexplainable.
And no more being alone.
Yeah. I knew how to kill my Tourette’s.
One step. One swan dive. One final fucking sayonara.
I stared across O Street, the busiest street in the city, to the bustling Westfield Shopping Mall. I looked at the hundreds of cars and wondered if any of the people in them could see me standing at the edge of the roof. I wondered how they’d feel if they suddenly saw me hurtle to the ground like a lawn dart.
I looked up, then looked down. I sighed and swallowed hard. And then I took one large step … back from the edge.
I’d never really do it. But I won’t deny that there is a certain power—and freedom—in knowing that I could.
Don’t screw with me, Satan, ’cause I’ll put you in the ground! Just remember who’s boss.
I walked back to the middle of the roof, where I sat with my back against a large wooden air-conditioning enclosure. I played with the rocks and tried to find a pretty one to keep. The sun felt good on my face as I thought about my time at the edge.
I had found the roof years ago while exploring. I went there to be alone. And for one reason or another, I always wound up at the edge. The people looked so small and insignificant from that height. And, sometimes, that’s how I felt.
It was easy to feel sorry for myself up there. No one understood me. My kids didn’t appreciate me. And after twenty-five years my wife said she loved me, but I knew it wasn’t the same. I wasn’t the same. I wasn’t as fun-loving—not like I used to be—and I knew she had grown tired of hearing of my pain.
Who could blame her? Or the kids?
But then, what was the point of all this suffering again? You think about such things at the edge of a roof.
Suicide is many things to many people. For some it’s the ultimate middle finger to an unfair world. For others it’s the final end to intractable pain. For me, if I ever got to that point, it would be both those things. But mostly it would be a way of asking, “Now do you understand how much I was hurting?”
No. I’d never do it. But tell me, how many years of pain I am supposed to endure before I’m allowed to say, “I just can’t stand this anymore!”
For Jeff, that number was thirty-one.
11
Butter and Salt on Your Neurons?
University Hospitals, Cleveland, Ohio. February 9, 2004.
Lying awake on an extra-long surgical table, Jeff stared into a bank of white-hot lights in an operating room so large you could kick a football in it. Jeff had had surgeries before—on a hand, several on his knees, and also for a hernia and his appendix. But he had never seen an operating room as enormous, elaborate, or high-tech. A wall of monitors faced the operating table, and two dozen finely detailed pictures of his brain hung around the room.
For months, a team laid the groundwork for the operation. Jeff’s neurosurgeon identified a “target” deep inside Jeff’s thalamus, the portion of the brain involved in controlling movement. The neurologic team mapped out regions of his brain using magneti
c resonance imaging scans and 3-D computer images to determine exactly where the electrode should be placed, and the safest and most direct way to reach it.
Precision was paramount. If they missed the target by even a couple of millimeters the operation could fail. Furthermore, the surgeon would have to rely on his detailed knowledge of anatomy to reduce the risk of having the electrode act as a small spear through blood vessels or sensitive structures.
It was almost time to enter Jeff’s brain. The trajectory had been chosen, the electrode driver had been mounted on the stereotactic frame holding Jeff’s head still, and the angles and distances had been adjusted from the “magic numbers” obtained from the computer. All his surgeon had to do now was finish drilling the holes and remove the dura mater, the tough layer between the skull and the brain.
The high-pitched whine of the drill chewing through his skull seemed like it would never stop. But then—
“We’re in,” his surgeon said.
Jeff had known for months that they were going to drill holes in his head. Now that they had, it was almost too much to process. He tried to cover his nervousness with humor. “What do you mean you’re in?” he asked. “You’re in my brain? Can I look? What’s in there? Probably not much, right?”
He slapped his right thigh. “Boy, talk about your invasion of privacy.”
His surgeon couldn’t help but smile.
“Hey, Doc,” Jeff said playfully. “That was a Craftsman drill, wasn’t it?”
“Only the best for you, Jeff.”
As electronic devices beeped and hummed like a medical symphony, his esteemed doctor bent over the back of Jeff’s head. He spoke in a calm and measured voice as comforting as an old sweater.
“Just want you to know we are going to get started,” he said. “We’re going to do the right side first.”
The eight-hour operation was slow and tedious. Jeff’s two doctors—his neurosurgeon and his neurologist—were joined by an electroneurodiagnostic technologist. Carefully, she passed a rigid microrecording electrode as thin as a human hair through Jeff’s brain. The incredible sensitivity of the microrecording electrode allowed her to listen to one cell firing at a time. For doctors, who knew how to interpret the brain’s Morse code, it was like a medical road map to Jeff’s brain.
Jeff couldn’t see what his doctors were doing, but he could hear it. It sounded like popcorn popping in a microwave. Some of the pops came slowly, others more quickly.
“What’s that sound?” he asked his neurologist, who now had joined his colleague.
“Your neurons talking to each other,” said his neurologist.
“You mean … I’m listening to my brain talk to itself?” Jeff said.
“That’s right.”
Jeff listened to the neurochemical symphony, wondering what his brain was saying. That he could even hear it was a miracle of modern science. It was hard to feel anything less than amazed as he realized he was thinking about the surgery with the same malfunctioning brain that doctors were trying to fix.
It was all so surreal. What must it look like in there? And how could they be sure about what they were doing?
Just relax and let them do their jobs, he thought.
Outside, in a small room, family and friends prayed and waited for news from the operating room. Jeff’s father believed they would know immediately if the operation had been successful—if it was going to stop Jeff’s tics.
That wasn’t the case. Surgeons would leave uncapped wires sticking out of Jeff’s skull. Then they’d have to do another surgery to implant battery packs in his pectoral muscles. Later still they’d have to adjust the frequency of his stimulators.
It would be a month before they knew if the operation had worked. Jeff hadn’t told his parents much about the surgery other than his sincere belief that it would work. He hadn’t told them about the possible complications. And he certainly hadn’t told them that the next time deep brain stimulation worked on someone with Tourette Syndrome would be the first time. He didn’t tell them because he didn’t want them to worry—or worse, talk him out of it.
When the doctors came out of the surgery, Jeff’s father anxiously peppered them with questions.
“It went very well,” Jeff’s neurosurgeon said. “Fantastic.”
“So it worked?” Jeff’s father asked.
“Well, we’re not sure if it worked yet,” the doctor said.
Jim Matovic’s face fell as he found out his son would need more surgery on February 20 to implant batteries in his chest, and then come back a third time in March to see if everything worked. Deeply disappointed, he turned and walked away, needing to be by himself. The next month would be the longest of his life.
12
“I Need You to Cover Oprah”
IT WAS A Monday in early March 2004, and I was just getting to work a little after 9:00 AM.
I felt like a bag of wet cement. Sleep deprivation will do that to you.
After walking a block from the parking lot, up two flights, and across the width of the Kansas City Star building, the long hallway that led to the features department seemed even longer. Shambling more than walking, I trudged dead-eyed and silent past chipper colleagues who offered their morning greetings. I didn’t dare look at them. I had to focus to keep Satan in his box.
Pain shot up the back of my neck. I wanted to scream.
I had to work.
If anyone can understand the agony that caused Jeff Matovic to beg doctors to bore into his brain, it’s me. As a feature writer for the Kansas City Star for more than a quarter century, understanding people is a part of my job. And as someone who has struggled with Tourette’s for the better part of fifty years, agony is a part of my life.
As a seven-year-old I ran through the streets of Swarthmore, Pennsylvania, shrieking like a teakettle. When I outgrew that, I began blinking and sniffing. By age ten I started nodding my head forward with quick, sharp snaps. I looked like a chicken buck-bucking its way around the henhouse. By the time I reached high school my head tic changed directions, moving left then whipping hard back to the right as if I were flipping my long brown bangs to one side. At the same time my head tic also changed in strength, adding a frightening violence to its sideways snap. I often shook my head so hard I could hear the thud my brain made when it slammed into the inside of my skull. Sure it hurt.
But it was never the pain that caused me the worst problems—at least at that point in my life. The worst thing about shaking your head in public is the way people respond to you. Some laugh. Others point. A few make comments. Everybody notices. And it hurts.
But what are you going to do? After you’re all cried out you just try to find the humor in it. One time I shook my head so hard at a University of Kansas football game that my reading glasses flew off and landed in a drunk woman’s beer. Try having that conversation.
Thankfully, my head tics had been relatively tame. Many others with Tourette’s have had it so much worse. But in the winter of 2004 my embarrassing head tics became far more serious. Almost overnight they seemed to increase in frequency, intensity, and variety. The biggest changes were internal; new anxieties and tensions, the excruciating way I had to wrench my neck, and a handful of other painful movements that defy easy description. Overnight, it seemed, it became intolerable to sleep in a bed, something I had enjoyed for more than four decades. It didn’t make sense that it was my Tourette’s. It had to be the bed.
In the next two years I bought four king-sized mattresses that I also couldn’t sleep in before giving up and defaulting to the living room floor. On my worst days I wasn’t comfortable anywhere. I wanted to jump out of my skin and run away from a body that no longer seemed to want me in it. I ignored the pain. I smiled and made jokes. But inside I grew tired of the fight.
One day at work it became too much. Keith Robison, a lanky editor with a big heart and politically incorrect wisecrack for every occasion, picked up on my discomfort.
“Y’OK?” he as
ked in a big voice.
“I don’t know,” I responded in a small one.
He opened his arms and flashed a familiar smirk.
“Man hug?” he said.
I didn’t want to smile, but I did anyway as I held up my hand to the big goofball as if to say, “I’m good.”
I wasn’t. I had two stories to write and no energy to write them.
“Good morning!” chirped Kady McMaster, an editor and longtime friend. “And how is Mr. Jim today?”
Mr. Jim felt like crap. I looked at my happily smiling coworker for a moment as I pondered what to say that wouldn’t be a lie but would still uphold the social convention of the moment.
“I’m here,” I said, grinning through sharp pains in my neck that were quickly joined by several waves of dizziness.
“Are you sleeping any better?” Kady asked with hopeful eyes.
God, how I wanted to say yes. How fun would that have been?
“Slept like a baby last night,” I’d say. “I feel wonderful!”
But I didn’t want to lie. And I didn’t want to tell the truth. I hesitated, as my sleep-deprived brain searched for words.
“No?” Kady said.
“Not really,” I said, almost apologetically.
As I reached my corner desk and plopped in my chair—a gray, coffee-stained, high-backed model that creaked when I sat down—I closed my eyes and fought back against the increasing tension. My neck moved like a rusty door hinge, and the muscles contracted as if being squeezed in a vise. Short of going into the fetal position, I couldn’t find a comfortable place for my head.
A friend came over to talk. Without explanation, I excused myself and walked to the bathroom. I didn’t need to go; I just needed to be alone. Sitting in the stall, I sighed as my head started to spin after several sharp shakes gave me one of my daily mini-concussions.
“Leave me alone,” I moaned quietly, as I leaned my head on a plastic toilet paper dispenser and cried until tears fell on my black oxfords. I had been through hard times before. You don’t survive as long as I have without being tough. But I’m not a machine. For the first time I began to wonder how long I could keep going before I cracked, fainted, quit, or died.
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